One of the upsides of the Covid-19 pandemic was that many family caregivers could work from home and better balance caregiving responsibilities. As adult day care centers and respite centers shut down, family caregivers became even more important to people living with dementia. It was not easy balancing caregiving responsibilities with work expectations, but it seemed like everyone was in the same boat: parents caring for children who couldn’t go to school and others caring for spouses, parents, and siblings with dementia.
When schools and daycares reopened a year ago, many parents breathed a sigh of relief. Employed care partners of people living with dementia, however, faced new challenges. They were now expected to return to the workplace but with many pre-covid resources missing. Numerous day programs disappeared. In-home service providers became unreliable due to insufficient employees. Employed care partners were also concerned about bringing infections home to vulnerable family members.
For today’s blog, I want to recognize the challenges faced by employed care partners and share potential resources to help with those challenges.
Care partners who remain in the work force often do so out of necessity, for income, retirement, benefits, or some combination of the three. According to AARP, family care partners of persons with dementia spend an average of $11,000 per year; this is twice the amount spent by family care partners of adults without dementia. The $11K does not include lost income from cutting back hours, turning down promotions, or losing business.
have two friends who are currently caring for a relative with dementia. Jan owns her own business. If she does not work, she has no income. She is also a care partner for her mom, who has Alzheimer’s dementia. My other friend, Leona, is caring for her spouse with frontotemporal dementia. Frontotemporal dementia can show up in people as young as 40 and in Leona’s case, her 50-year-old husband is too young to get retirement and she is working on getting him disability benefits. Meanwhile, Leona’s job provides both income and important health benefits. Both women are in a tough spot. Both have worked hard to get where they are. Neither wants to stop working.
Although my friends work in different industries, and one is self-employed while the other is not, both women share similar challenges—similar challenges that you, yourself may be experiencing.
Jan is finding that her interactions with her clients are being constantly interrupted. Jan would be in mid-sentence, helping a client with a purchase, and her phone would chime. Glancing at the caller ID, Jan would apologize: “It’s the sitter. I have to take this.” The clients mumble understanding, but she can see their patience wearing thin after the third interruption in the space of 15 minutes. The interruptions are more than an inconvenience for Jan. She has to mentally regroup after each interruption, which means that her mind has to exert extra effort to return to the conversation.
Leona works for a family-owned heating and air company. Her husband, who just turned 50, is too young for retirement benefits and they are waiting on disability—which feels like it is taking forever. Although he can make simple meals and meet his basic needs, he gets frustrated when he cannot use the TV remote or cannot log into the computer. His default is to angrily call his wife and either tell her to come home or to blame her for “messing stuff up” before she left for work. These telephone calls distract Leona and she has made small mistakes as a result of these calls.
Here but Not Here
Like most business owners, Jan’s work week is greater than 40 hours…more like 60. She cannot afford to hire a sitter for 60 hours/week to stay with her spouse while she runs the business. Always creative, Jan has a sitter for a few hours during the busiest times of her day. Because her shop is next to her home, Jan has planned times where she leaves her sole employee in charge so that she can run over to the house and check on John. This arrangement seems good on the surface, but the reality is that the back-and-forth movement gives Jan no time to think or to be proactive in either role. She is constantly reacting to issues at her shop and problems in her home. By dividing herself up between two places, she is never really present in either one.
Leona works about 30 minutes from her house. She currently cannot afford in-home care; it would devour her entire paycheck. She has put together a system of check-ins throughout the day, relying on friends and family members. Sometimes her husband welcomes the visits. Sometimes he becomes angry and defensive about “having babysitters.” Leona feels like she cannot win. She finds herself unable to concentrate on her work activities because there is a constant undercurrent of worry. Leona even turned down a promotion to supervisor, in spite of a healthy pay raise, because she did not think she could handle the additional responsibilities while being a caregiver for her husband.
No Workplace is Spared
I believe that many corporations and businesses underestimate the effect of dementia caregiving on their bottom line. When I was caring for my family member with dementia 8 years ago, I re-arranged my work schedule to be home when no one else was available. I was lucky that I had that type of flexibility. At one point, Mary was hospitalized and was discharged to a rehab unit connected to a nursing home, but my responsibilities did not lessen. I received nearly daily phone calls at work about some issue or problem. I made sure that I left work early enough to visit with her around dinner time, to make sure she was eating. These caregiving activities siphoned off hours of productivity. My grant submissions and publications decreased during my time as a caregiver. My teaching evaluations weren’t bad, but they were not stellar. The only place I felt like I made a difference during the time I was a caregiver was in clinic, because I understood the challenges faced by families of my patients.
What Are Some Options for Family Caregivers?
One option is the Family and Medical Leave Act. Employees can take leave in increments of less than 8 hours a day. This may be useful for taking family members to doctor appointments and if there are times when you need to come to work later, or leave earlier, to provide care to your family member with dementia.
Another option is telecommuting, although that can be almost impossible with a family member who has moderate to severe dementia and wants to shadow you. Many care partners become frustrated trying to work under these conditions. This may be a situation where you may want to have a hybrid situation where you have a sitter during your work hours.
Some employers are offering elder care benefits, similar to childcare benefits. I would recommend that you speak to your HR representative to see what options you have. You may also want to suggest that your employer begin offering elder care benefits.
Can Family Caregivers Receive Payments?
In some states, Medicaid programs pay family members to provide care to persons with dementia, as long as certain criteria are met. There is a program for veterans that also provides payment to family members who are providing in-home care. Area Agencies on Aging also offer a variety of home and community-based services for care partners. I would recommend starting with your local Area Agency on Aging because benefits differ state from state and sometimes, county from county even in the same state.
I would love to see more options for people in the workforce who are care partners of persons living with dementia: reimbursement for elder care, access to emergency sitter care, and workplace programs that increase care partners’ knowledge and skills. One answer may be partnerships between companies and academic health centers…perhaps a caregiver coaching program similar to the one that I provide. I welcome ideas and suggestions from all of you who are caring for a person living with dementia.
Dealing with refusals and arguments? Get a free copy of “Dementia Hacks” today–click here.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.